Overcoming Adversity and Embracing a Different Way of Life
by Kirsten Steenkamp
September is National Spinal Cord Injury Awareness Month; and a fantastic opportunity to dive deeper to explore stories of those impacted by spinal cord injuries in South Africa. Through uncovering some of the life-changing experiences in others’ lives, we are able to gain insight into various social matters. Now, possibly more than ever, we need to shine light on that which is good in this world. I hereby invite you to join me in this courageous and deeply personal account of adversity and courage: Juan’s Story of Hope.
Sitting across the table at a coffee shop in Rondebosch, Juan Celliers was perplexed at why I wanted to know more about his life. Curious about how Juan’s story collided with The Chaeli Campaign, we began our intriguing conversation. A first-year fine arts student after matric, Juan Celliers is passionate about painting, going out with his friends and sports – including running, rugby, swimming, surfing, high jump and hockey. And although his story starts many years prior, Juan’s trajectory takes a life-changing turn at the age of 19 years old.
After a night out clubbing in 2007, a motorcar accident left Juan with a neck fractured at the C5 vertebra. Juan became a quadriplegic and wheelchair user, unable to walk, eat independently and use most of his body. Having to reimagine how to accomplish the most simple of activities, Juan said that the recovery process began with trying something different every day and just “figuring it out” as he understood more about his impairment.
During the first couple of years after his injury, Juan’s extremely limited fine motor function hampered his ability to continue his fine arts major. Exploring new career paths, Juan studied law for two years, even tried his hand at professional poker and luckily for us, joined The Chaeli Campaign family.
With Juan’s sporting background, his involvement with the organisation brought into priority the lack of sports participation for people with disabilities. In 2010, soon after the idea was born, the Chaeli Sports and Recreation Club was formalised and Juan became the first chairman! Increasing sports access began with a wheelchair dancing program, but 10 years later the club has evolved to include adaptive cycling and running. For Juan, however, the months and eventually years that followed did not progress so simply.
Years of repeated hospital visits and a questionable immune system, life became what Juan describes as a waiting game to see how much his body would heal or adapt to the injury. In retrospect, Juan says that he was consumed by the disabling impact that his injury was having on his life. Juan describes that a self-destructive narrative repeating “can’t do more” and “can’t do this” kept him stuck in a sort of tunnel vision, focusing on his pain and his inability to participate in life as he did prior to his accident.
As Juan and I sat talking, he described the “now or never” point in which he realised that it was time to embrace a different way of living. The mindset that was consuming his days and clouding judgement around what was now possible began to shift. Juan had the epiphany that remaining on his current trajectory would leave him unbearably miserable and so, he told himself that it was enough. In 2017, Juan admitted himself into physical rehab for a 4-week intensive – a recovery kickstart he says changed his life.
Reclaiming his strength – physical and mental – and his will to be more productive in society, Juan’s journey towards independence and recovery became possible by taking control of his power in this life. Liberating himself from the vicious cycle of feeling and being victimised by the very body in which he exists, Juan was able to rekindle his passion for art through drawing, illustration and writing. Over time, Juan started wheelchair rugby and became involved in a control study for the non-profit, Walking with Brandon. In addition to his art endeavours and regularly going to the gym, Juan has his eyes set on publishing children’s books and as of last November, is now a home-owner!
Talking to me about how lucky he is, it is not the way that most non-disabled people would probably view being in his situation. But, through depression and the darkest days of his life, Juan has emerged mentally stronger, more resilient and more accepting of life than ever before.
Juan says “I’m the 1%”; and he unequivocally reminds me that the views within the disabled community are as diverse as the people who hold them. Illustrating one of his viewpoints, Juan recalls his facetious response after being assisted to the front of the queue in a bank. “Why should I go to the front?” Juan said, “if anything, I’m sitting in a wheelchair chilling.” Juan understands that people want to help, but “I don’t want a different standard of treatment” is the phrase that Juan expresses repeatedly during our conversation.
Some people who are trying to assist, as Juan puts it, feel helpless at not being able to change the fact that he is disabled. This discomfort, he feels, then turns into an overcompensation to help or be of service. Although the intention to accommodate is warranted and many times necessary, sometimes it is not. If we would like to engage more inclusively with others, disabled or not, each of us has a responsibility to become better informed about how our actions could impact those we are trying to help. A consideration to keep in mind when offering assistance is to check whether it’s appropriate and desired by the individual who is receiving it.
As Juan and I were finishing off our coffees, I asked about his personal opinion of disabled people in society. Juan’s sentiment is that people with disabilities are not considered to offer or have as much value in society as non-disabled people. Preconceived ideas and attitudes about what is possible for people with disabilities limits the motivation for supporting and prioritising disability. If disabled people are given the necessary tools to become more visible and productive across sectors in society, the landscape of what is possible will look very different.
Through the provision of appropriate infrastructure, healthcare and access to essential services, people with disabilities are able to participate in – and enjoy – a more accessible, inclusive and just life. Whether it is through spending more time, resources or developing more understanding for others, Juan feels that we need to invest more in the people around us and in our country. Bearing this in mind, I feel compelled to encourage each person reading this to extend the compassion and empathy given to those with visible disabilities to all the people with whom you interact in your daily lives. Although we will never truly know whether those we meet are in pain, fighting internal battles or struggling in some way, kindness does not diminish if shared abundantly; in fact, it can only grow within us.